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It may be working....

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  • It may be working....

    I started Elmiron in Nov...I am not very good at taking it but I am now trying to get on track...I am supposed to take it 3X a day but with the whole 1hr before food and 2hrs after..sometimes I forget or only get 2 times. So I really havent used up my 3 month perscription yet.

    I am having no side effects (just to reassure some people) I was SO afraid to go on it that I delayed it.

    I am feeling pretty good..well today not so much because I was silly and ate a huge chocolate cake chunk. IC is funny...I had the same cake two days ago and no problems but today there is a problem!

    I am also on marshmellow root that I take with food and it also is good sometimes at calming down if I want some red wine.

    I can have sleepytime tea which I was never able to have, chocolate bars (just not big peices of cake!!-oops) red wine I can have it bothers me a bit but not as much and I am now noticing that I flare less during my menstral cycle but I am still going to go back on the BCP because I felt better on it.

    I was able to drive to my inlaws at Christmas (trip time 12 HOURS!!) with only FIVE pee breaks-yay for me!

    So I notice small differences and I am better than I used to be. My uro wants me to go on DSMO if I dont respond by June but I am trying to avoid that as if I am not bad and dont cheat on the diet then I am a-ok. I just love wine and chocolate too much.

    So besides my silly indulgence today I am doing better

    I may not be 100 percent the way I used to: coffee, chocolate, red wine, spice, etc but I am learning to live with that.

    I think its frustrating that people think I shoudl be better with Emilron after like one week and they dont understand why I STILL cannot drink tea-I swear ppl think IC is like a cold!! geez but I do my best

    Just wanted to give some tiny encouragement to people who are afraid to start Elmiron and just a rambling post!!

    Oh and BTW just for people who start it: your hair shedding has a cycle. You shed a lot during the months of Nov-Jan. I swore I was losing my hair but it was only due to that and otherwise I have had no problems. Headaches at first and some GI issues but nothing. I can even take it capsule and all...

  • #2
    thats great to hear that its working for u! I hope to see some good results too. I just started about a month ago. Im also starting dmso.
    Diagnosed with IC October 2009- through bladder biopsy (no glomerations or hunners ulcers found, just irritation)

    I have moderate-severe IC

    Currently stopped taking all medications due to pregnancy


    • #3
      Thanks I think it will get better once I learn to take it regularly.

      The other night I went out and had a glass of beer, coke AND hot chocolate. Before I could never have any of those let alone in a combo in one night!!

      I can have some beer but not others now.

      I will say this: Emilron so far as allowed me tiny indulgances but I need to not expect me to be able to eat 100 percent what I used to.

      What it has so far done is eliminate non-food or drink related flares. So now if I stick to the diet then I am good everyday....


      • #4
        Just as an FYI, my uro gave me the okay to take my Elmiron twice a day... one pill in the morning and two at night. Makes it MUCH easier to remember, and he says it makes no difference. You might want to ask yours if you can do the same if you're having difficulties.

        I'm so jealous of your wine and chocolate consumption! I haven't had the guts to try anything not in the Generally Okay column... gonna start soon though because I don't really have bladder symptoms, just pelvic floor pain.
        Symtoms started July 2010.
        Severe pelvic floor pain only.

        2 time PT graduate!
        In medical remission since August 2011; able to eat and drink anything I want currently.

        IC meds:
        200 mg Elmiron in the morning
        100 mg Elmiron @ night
        Macrobid after intercourse

        03/11 07/11 01/12
        If at first you don't succeed: 07/26/2013!


        • #5
          Thanks for the suggestion of two at night! I think I am going to try it!!

          I have what I would consider mildish IC. I can drink all alcohol except red wine, no problems with most citrus fruit, no problems with cheese.

          Coffee, tea, red wine, spicy and lots of chocolate is my problem. If I dont indulge in any of those and its not my menstral cycle (although not really anymore) than I feel normal except I think my bladder capacity is smaller that normal but nothing extreme.

          My hope is that someday my meds will allow me to indulge in a few things more but I have accepted and I am thankful that it is not worse. I think part of that is because I really was able to recognize my IC quickly and have modified my diet as to not to worsen anything.

          I also wanted to encourage new patients who havent tried Elmiron to do so. I think its good to be aware of the potential side effects but please try it. I have spoken to many women who have not had any side effects. At least give it a try if you can.....


          • #6
            I tried the two at night and boy was I ever sick to my tummy!!! I guess that doesnt work for me....

            Oh well!! Guess will have to be better at remembering!